Not a great week for celiac awareness folks.
No other medical condition, especially one as serious as celiac disease, gets this total lack of respect.
Cases in point:
Horror Story #1: The above image was sent to me by a fellow celiac. She had an international flight on Air Berlin. She requested a gluten-free meal/snack a week early and confirmed it at the check in desk. That little orange sticker even had “GF” and her seat number on it. And what did they give her? Friggin’ crackers where the first ingredient is wheat. To top it off, they also gave her some mystery/unlabeled bread in a sealed plastic bag. When she asked the flight attendant if it was gluten free, she shrugged and said “I guess…”
She emailed the airline about it… took nearly a month to send her a basic PR/sorry this incident happened/we’ll look into it/canned response that didn’t even mention her complaint.
Horror Story #2: I had a chat with Jennifer Esposito last night. She told me of a very popular restaurant in NYC that lies about their gluten-free dishes because the chef believes celiac disease is a fad. Yes…our disease is a fad.
We are in discussions on how to “out” them. It may entail me dressing up like a sexy 20-something female so I can get a waitressing job there for a week. What? You don’t think I can pull it off?? Just take a look at my Brittney Spears Halloween costume a few years ago >>>>
Horror Story #3: At the BlogHer conference last week, an extremely popular event, our fellow celiacs were fed gluten not once, but twice. Twice!!
Gluten free is our drug and yet because of the idiotic gluten free craze, we are simply not being taken seriously. Can you imagine any other disease where there is such a nonchalant attitude about what keeps us safe?
What’s the answer? I could say more awareness and more advocacy. And I for one will keep fighting the good fight.
But there has got to be more to it than that. Anybody? I am open for suggestions and would LOVE to hear them.
I travel a lot for conferences and every time I’ve gone to a conference held in a Sheraton I’ve gotten violently ill. The first time, at a conference in the middle of the Research Triangle (think Duke, UNC, etc) they confused gluten intolerance with lactose intolerance and I was sick for weeks. Then this past January in San Diego I ate a breakfast after being assured that the meal was gluten free only to find out later that they didn’t think fryers were an issue (!). That resulted in a spectacular pain-filled faint in front of potential employers and the full pantheon of national authorities in my field and ended with a hospital visit.. I tried contacting the hotel chain and got nowhere.
Most big companies simply don’t give a sh*t.
Hey Gluten Dude. Awesome work you are doing. I am writing from the UK. Diagnosed coeliac and super sensitive. I feel very strongly about this – is there a way to improve our position legally. I am sick and tired of non-commital, ass covering, buyer beware attitude from the entire catering industry.
Why don’t you quit your job and start a gluten free business? You already feel very strongly about it, you obviously have the smarts, all it takes now is some elbow grease.
Genius Bread should give you enough incentive from a success point of view. And you could beat their quality……
Hello. Thanks for you comment. Where in Europa are you? Perhaps I just might… Do you want to join me?
We are in SW France. Near Cognac.
Victoria (SO) already is busy ramping up her business, but Europe is indeed a white spot on her map…..
Hi! I live in Scotland and I’d be very interested in taking part. A friend with Coeliac has just started his bread roll company, Pulsetta, which produces gluten-free breads made from pulses. He bought a warehouse and tore it all down in order to build a completely, guaranteed gluten-free business to ensure that all of his products are completely un-contaminatd. Isn’t that incredible?! Again, I’d be extremely interested and have already started producing small amounts of baked goods to local health food shops – the only thing which is stopping me at the moment is the legal issue (I’m 14 years old and thus am not allowed to legally own a company in the UK). You can email me at thefoodintolerantteen@gmail.com if you’d like to expand!
Best regards,
Alessandra
It’s all about the money. People are only working to pass the time and get their check. They could give two sh*ts about you or anyone but themselves. It’s just so sad. It always goes back to that saying: “…walk a mile in my shoes, blah blah blah…” People don’t truly care unless they’ve been victimized themselves. I never go out to eat, ever. Because the last time I did, I ended up in the hospital and with a $30,000 bill. F**k celiac disease, it’s still and always be a learning process for me.
Perhaps the focus ought to be shifted back to celiac disease instead of gluten free food. There is A LOT more available on the web about “gluten free” than celiac disease, partly because of the fad aspect and partly because of the need for gluten free information for those with celiac disease. Maybe advocacy for celiac awareness is more important now. This is coming from someone with a gluten free based website focus.
I’ve always said this too. The problem is “gluten free” is a marketing buzz word that many companies are profiting off of. It’s so hard to defeat that. But let’s keep on trying.
Sadly the Canadian Celiac Association, which is supposed to advocate for people with Celiac, has jumped on the gluten-free bandwagon at the expense of Celiac. At the annual conference this past spring they basically declared a fait accomplish because there are lots of gluten free menus in restaurants. Doesn’t matter that none of the food is actually gluten-free.
Actually, the only projects I am aware of that the Canadian Celiac Association had in association with any restaurants were with two specific ones – First was with Boston Pizza and the other more recently with Turtle Jack’s. Apart from those collaborations, the CCA has also worked closely with Metro to release the Irresistibles Gluten Free line of products. If you know of any other restaurants they have collaborated with to have a truly celiac/gluten free friendly environment, please let me know and I can confirm the facts with my mother who was on the board to help spearhead the above collaborations and who has celiac, chrones, and colitis.
Both Boston Pizza and Turtle Jack’s have gluten free zoned areas, ovens, prep knives, etc. to help significantly lower the risk of cross contamination of gluten free items. In fact, Turtle Jack’s made a press release to show the specifically designed gluten free prep kits and explain their procedures in making gluten free food safe for celiacs to eat.
It should also be noted that while the CCA has brought up the fact that there are more restaurants out there that have gluten free options, they have stated that it may not necessarily be safe from cross contamination so patrons should always do their due diligence in checking and no matter what, risk is always taken when eating at a restaurant that doesn’t fully cater to those with Celiac disease.
I have eaten at 3 different Boston Pizza’s in Manitoba, Canada and have been glutened every time. On my first visit another server was walking by my table and noticed I had the GF menu so she stopped and asked if I had an allergy or was just dieting. I said I had an allregy and am very sensitive to gluten. She admitted that she was too and said she has gotten sick off of almost everything on the GF menu, and suggested the pizza or GF pasta were the only safe choices. Even then I still got sick. I have sent an email to them and one manager replied to see exactly what I ate and after a few back-and-forths he could not explain why it happened because as far as he knew everything should have been safe.
I was at BlogHer. When the staff of the Sheraton told me that the couscous was gluten free, I quit taking their advice.
On what planet is pearled BARLEY a GF safe food?? SMH
I carry a food card with me everywhere!! Clearly outlines fryer issue & hidden items like soy sauce. Still have the occasional oops where I have a tasty mouthful of sweet potatos only to realize…shit that yummy flavor is strusel not brown sugar. But feel better with being able to point out to restaurants how their GF menus need to be modified for safety
The Sheraton at 301 E North Water? If it is, then I’m *really* shocked.
That’s the hotel my work stays at for our conference, and I had them pretty well trained up through January. Not a single person got sick because of gluten intolerances/celiac disease since I’ve been leading the logistics for our conference – I inspected kitchens, talked to chefs, specified with the catering staff, got very specific with our needs. I even did a 60% gluten free menu over the 5 days (as in, everyone got 60% gluten free, not the gf folks got only 60% ::giggles::) and there were rave reviews about it by the normals.
They had the celiac foundation conference there as well, and they did great then, too.
Make sure to submit a complaint to them – if you need the manager’s contact information I have that, as well as the lead chef. They can’t change if we don’t tell them something went wrong.
By the way, to clarify. The BlogHer hotel was the Sheraton. The food was served at the McCormick Convention Center. Those are the people who don’t have a gluten-free clue, yet plenty of gluten-free signs to put in front of . . . gluten.
I understand cross-contamination, etc. being a pain and perhaps somewhat challenging to master. But simply serving food that you think is safe for celiacs when it’s clearly not is just lazy and irresponsible…and I’ll throw in negligent to boot.
Oh hey! Yes, that was me getting the gluten-free roll that was the most delicious gluten-free roll you’ve ever eaten. Oh, right it was filled with gluten. And I also saw the couscous and warned people away from it, but of course I was too late.
It was a bummer. Especially when past BlogHer events have been so great about providing a gluten-free table for us.
How sick did you get?
I was the one GD wrote about. After one of my fellow celiacs ate a full-wheat roll that was labeled GF, I called their bullshit and tore a new one with the catering team (who was apologetic but had no idea what they were talking about). Then I demanded that we were individually served safe food directly from the chef (whom we also talked to and he was awesome). Problem with that? Next day the chef’s team brought out our meals and I went to go double check exactly what they gave us compared to what was on the banequet table and they served us a plate full of full-wheat seitan. I flipped out big time. Enough is enough. Why do I pay for a ticket if I can’t eat the food after the conference assured me that it would be safe to eat?
I just don’t take chances anymore. I don’t trust anyone. I am “that girl” who is out eating with her lunchbox and her family. And take it from someone working in the health industry I would never eat hospital or nursing home gluten free food either. Never.
One of my biggest beefs of many: companies who have a gfree menu, but have the little legalize comment at the bottom that this food is not recommended for those with celiac disease.
Don’t serve it if you are not going to do it right.
I am totally with you. i generally stick to just a handful of places and often bring my own food to certain places. I find most places don’t care. They are almost relieved because they either don’t know or can’t really be sure things are GF. I brought my own salad to a conference on day and the staff thanked me several times saying they do their best but its just hard to ensure that one plate is GF when they are serving 100s. I think the importance is if they are honest. i would rather go hungry at a place that’s honest and tells me they just can’t do GF than have them say they can and are not sure. I am always amazed at Celiacs who are able to eat out so much. I guess I’m just not as adventerous plus where i live is only so-so for GF dining anyway so i guess i’m just getting used to improvising and cooking my own food. The ONLY good thing that came out of celiac for me was i learned to cook. Oh and i learned Tequilla was GF : )
The (Patron) Silver Lining you might say 😉
Oh I know, NE. I was once told by a waiter “you could have the farro”. If I had not been with family members, I would have walked out, then and there.
I’ve gone back in to restaurants when they’ve glutened me, and made a stink about it right there in front of customers. I don’t do Yelp, but if I did, it would go right on there.
Cookbooks like Gwyneth Paltrow’s don’t help at all, because her recipes all talk about days when you can have a little bit of gluten. *argh*
Gwyneth and argh go so well together.
🙂 Oh Gwyneth….
Maybe educating people about the death rate. Maybe people will take death seriously.
With all the media hooplah surrounding the simpsons founder giving away all his money because he’s dying from colon cancer…it makes you wonder if he’d have had a chance if someone told him about celiac sooner?
Jaded friend pointed out “its not in the medical establishments best interest to let celiac be a real disease, by working with celebrities & food companies they keep it a joke you can die from while they invent a magic pill…that will still kill you”. Think the spirit of that comment is more true than I would like to believe.
Even though you and I know it’s danger, most people die from other diseases “due to their celiac” but it’s always the other thing that is the cause of death. I’m not minimizing whatever that “other thing” is. It’s just that the population doesn’t see celiac as serious because 1) we don’t keel over when we have gluten; and 2) it’s food related.
I’ve read about people who die from their insides rupturing or being torn apart. I can’t recall which site it is that I read about a woman who her father died from his intestines being split apart due to gluten in medication I believe it was, he was at the hospital at the time it happened and they couldn’t save him. I’ve read about a few similar deaths. I don’t know if these were confirmed and/or how common it is, but I do think people can die directly from celiac disease, although I completely understand what you’re saying about it being a secondary disease that usually causes the death. It really doesn’t make sense. People die because of A.I.D.S. everyday and people take that very seriously, but no one actually dies of A.I.D.S technically, it was something else that causes the actual death, like pneumonia for instance. I’ll never understand why celiac disease and death related to celaic disease is such a joke to so many uneducated people. A life threatening chronic disease is simply that and dead is dead.
I hate that gf is such a buzz word… sometimes I say “wheat, rye and barley” so I don’t feel like I’m part of the trend… it’s like… no seriously, I’m part of that disease group that actually gets really sick, not the doing it as a fad where it doesn’t matter. I’ve started to show my family m dh rash and blisters (which spanned my entire back and stomach last time) since it helps people ‘get it’ when they see it with their own eyes.
It’s sad that there’s such a backlash against us, and that we really do need to be advocates for ourselves. For me, that means not eating out for the most part. I work in the food industry, I know how stressful it gets, I know how little the management cares, the high turn over, the busy and/or uninformed cooks, the servers who bust their butts and are treated horribly. Our food system doesn’t encourage being Celiac friendly, there’s too much that needs to happen for the stars to align to get it right unless the management is 100% on top of food allergies/restrictions.
Unless I know it’s totally safe for me to eat, I’m bringing my own meals. I have this great lunch box set that I carry around with enough food to snack on through the day. It’s easier to take an extra half hour to prepare my own stuff than have to worry, ask a bunch of questions, and be anxious over if my food will be handled properly.
And ya know… on the bright side, this has forced me to be super aware of my food and health. I take better care of myself now than I did 6 months ago. So while Celiac Disease sucks in a lot of ways, it has been the catalyst for a lot of positive changes in my life and finally understanding my health problems is worth the stress and hassle.
“Our food system doesn’t encourage being Celiac friendly, there’s too much that needs to happen for the stars to align to get it right unless the management is 100% on top of food allergies/restrictions.”
I love that.
I also love your attitude.
And I too have a lunch box. It’s a Happy Days lunch box with Fonzie and the gang on it. Is that not cool still 😉
I say, “BULL droppings”. They know how to “get it right”. They do it all the time with raw chicken. SO the “ability” is present. The understanding is present. The TRAINING is already in place!
They just don’t care about something that can’t actually be traced directly back to hem by the legal system. They can’t be sued for making Celiac’s sick equates to “buyer beware”.
OK, rant over now. Back to your regularly scheduled reasonable posters.
In a word – horrifying. Like Wendy, I only eat my own food. I still question myself and wonder if I’m being “overly” cautious. I want to think I am but then I read these accounts and well, I’m back to square one. Claudia, I am literally rendered speechless when I read your accounts about your work and travel – one logistical nightmare!
I think the “gluten-free” trend is here for the long haul. It’s just too profitable to die off. Now, the million dollar question is how do we navigate through the mess this trend has created to ensure celiac safety.
I’ve been staring at my blinking cursor now for too long trying to come up with a cohesive answer – so discouraging.
I don’t have any easy answers either. But I will continue to press for one.
I just hate that part of my story would encourage people to not trust anyone. I get so lucky, and then incidences like this ruin it for everyone and everything. So annoying. So frustrating. I WANT people who need to be gluten-free to be able to find and trust people. I just want the world to be a better and happy place. One where we don’t get poisoned…
If you want something done right, do it yourself.? That’s what my wife said before she stepped up to the plate.
She never looked back. I have not heard her complain once about lack of GF safety when dining out or travelling. Nor did she get sick by sticking to her guns when the server sounded shaky, or the food provided was questionable (American Yogurt on planes….)
While I agree with you that many suppliers and service providers don’t give a shag, it is equally true (from experience) that self reliance in all matters food is not that difficult to accomplish. On the road and at home.
Start with separating needs from wants and you are half way there. Yes, you’d want a cake with that coffee at Starbucks, but do you need it?
With the sad proliferation of low end, Sysco supplied franchise chains across America becoming the norm for dining out, why don’t Celiacs support the Espositos and other hard working business owners of this world some more? Because they are not Wal Mart priced?
When living in the US, we mostly picked individual, owner operated holes in the wall over Applebee’s or Cheesecake Factory. They did listen, it is their business, not a dead end job.
If we did dine at a national chain or bigger establishment, my wife made sure her requirements are taken seriously, by simply stating she’d prefer to take her hard earned $$ elsewhere if her DISEASE is not being recognized the way it needs to be. All along the chain from server to the kitchen to the manager. In a polite way though.
And what happened to home cooking and baking? Nothing ensures food safety more than your own home made meals. Don’t give me the “lack of time argument”, because it’s not true.
When it comes to your health, you make the time. Crockpot it if you have to, but start somewhere. You won’t look back at horror stories anymore.
Great comment. I now prepare almost all my meals and only dine in four personally vetted restaurants in London, and none elsewhere so far. I would be interested to hear your views about chains and single family establishments in Europe especially UK.
Thanks
I have not been to the UK since working on a boat in Lowestoft…..
No valid feedback.
On the continent however, Italy and Spain are the trail blazers, while France seriously is stuck in 1972. (And not just with this issue)
While Steak Frites is a safe bet for Celiacs……when you hail from Canada, the beef here just does not cut it.
I am not complaining, this is the country where bakers provide fresh Baguettes three times a day to a religiously loyal crowd, why would they even consider gluten free.
This is what my wife bakes herself:
http://theceliachusband.blogspot.fr/2013/05/la-times-finds-gluten-free-bread-that.html
Looks great! Good luck with it!
I moved to London two years ago and in my experience (NOT scientific at all) I have had more difficulties with small non-chain restaurants than chains. I don’t know exactly why. It’s not that people have treated my GF allergy disrespectfully, but I’ve gotten sick more in the UK at small places than ever in the US. I’ve become much more picky about where I eat and what I order. There are a lot of great GF restaurant reviewers that keep blogs as well. If I’m going to be in a certain area of the city, I try to do my research. I treat every place with suspicion at first, though. I think it’s only smart to do so.
Hi there. I really agree with you about small family run restaurants being better for GF in the USA than big chains. I have eaten in diners and family run truck stops without getting sick once because it was obvious (after extensive conversations of course) the staff knew what was in everything and the people cooking the food were in control of their ingredients and their kitchen processes. You have to be willing to have a good long conversation if necessary though, and I have gone into places and not eaten anything because I just couldn’t trust the staff. You have to trust your gut instincts. (Sorry, couldn’t resist. :P)
I kind of agree with you – but if I got to a conference for several days – you want me to pack a refrigerator? What about the conferences where the meals are included in the price? And don’t assume that I didn’t do my due diligence ahead of time to make sure that they understood the seriousness of my DISEASE and they assured me that they could accommodate me.
Our family just started going gluten-free for reasons that were behavioral, but after all the reading I’ve been doing, I think we are being helped by some chronic issues (constipation, anger, fatigue, brain fog) that don’t always result in the same violent sickness that someone with diagnosed celiac can have. But we have had only 1 violent temper tantrum with my 4 year old in 3 weeks whereas we used to have them almost daily. She has improved tremendously and we didn’t need a doctor to diagnose her with anything, which probably would have been adhd anyway.
What I’m trying to say is that while it may seem like a fad to someone who’s been diagnosed with celiac, it’s not a fad for us, nor do I think it’s bad for anyone to stop eating gluten for any reason. I don’t really think there are many people who are doing it as a fad, I think gluten intolerance/celiac is getting more airtime, therefore more people are trying it.
Hi Amy. Thanks for the comment. Just to be clear, I support ANYONE who gives up gluten 100% for any health reason, as long as it’s not simply to lose weight, as that’s a load of malarkey.
Well, it could be malarkey, but I can see someone doing it for weight-loss only to find they stop having intense cravings or lessen their depression after going gluten free. They may not know they were gluten intolerant of have undiagnosed celiac and they actually lose weight. They may have had unabsorbed nutrients that cause their body to just work better.
What’s needed is a hell of a lot more research to find out why gluten does what it does and why so many people are better off without it.
Thanks for being open to the discussion:-)
My suspicion is the link between GF and weight loss came about from the Paleo diet (which I personally follow). Paleo consists of:
Nuts and seeds
Lean meat
Fruit and vegetables
Little starch
No Sugar
That’s it, nothing else. Note that all grains are ruled out if you follow Paleo strictly. Most GF processed foods that you can purchase are not Paleo, but eating GF is, cross contamination aside, a damn sight easier than Paleo, and hence, it is more popular, despite being a less effective health management tool in normal populations.
It’s very possible to eat a very bad (in my opinion) diet while being gluten free. Most people who eat Paleo will lose weight, mostly because they are consuming less calories overall than they used to, and they will hold onto less water because of the elimination of grains.
To summarise, Celiac? GF/Paleo, your choice. Want to lose weight? Paleo all the way, steer clear of the processed GF foods.
These horror stories are the reason why I don’t eat out very often. People look at us as if we have spiders crawling out of our ears and that we told them to go beat up their mama! It is a real disease with serious implications—intestinal cancer for one that has a poor prognosis. Celebrities don’t help our cause unless they have the disease themselves. Maybe we should save our vomit and loose stools and send them the the restaurant with a cute little note of how much we appreciate how they took care of us. My family especially my son are really understanding about how I need to stay gluten free. In fact my son tries new recipes for me and bakes up some awesome baked goods—non GMO and sugar free. People take diabetes more seriously than Celiac disease.
Carrying around a bag of loose stool? Let me sit on that one.
From the experience of walking the dog….. No one (I mean NO ONE) wNts to talk to the woman with a little blue bag of poop i. Her hand.
We were on a transatlantic flight on United (the Greyhound of the skies) and the flight attendant gave my daughter her GF meal, (wait for it….), with a croissant on top. It was a prepackaged meal, and the croissant was outside the plastic, and luckily my wife and I order GF in solidarity with my daughter, so we were able to give her an untouched GF meal. It was one of those situations where all the meals were prepackaged and being served with an extra croissant treat, and they probably thought they were doing us a favor. We did tell the flight attendants that they shouldn’t be doing that that, but I have no faith/confidence that it won’t happen again.
Same thing happened to me – I can’t remember the airline – I want to say it was Air Canada, but I had a special GF meal, and TADA a bun on top. The bun looked edible (!!) so I asked, “Is this gluten-free?”. And the flight attendant responded, “Uhm, no, er, I don’t know”. And took it. She never came back.. so I asked if there was a replacement or whatever, and she just glared at me and said, “No”.
Also recently received rye bread in a “Gluten Free” meal on United international flight (SFO-FRA).
Sadly, people don’t generally care unless they have family or friends with the issues. I have friends and neighbors whose kids are deathly allergic to peanuts and they had a hell of a time being taken seriously by schools etc.
Someone mentioned more talk about Celiac disease and less about GF. I think that’s a good idea. I was diagnosed with chronic lymphocytic leukemia (CLL) a year before finding out I have celiac. Now that I’ve been gluten free (and casein free) for about 13 years, the CLL is basically gone (the gene test shows I have it)…the only change being my diet. Celiac causes MAJOR problems with people’s health, depending on what you are NOT absorbing…that’s what the public does not know about. So education is key….altho I don’t really think it will change too quickly.
You have to take care of yourself and do what you need to do to stay safe, like the GD’s suggestion to buy a small portable grill to take to barbecues, bringing your own food on airplanes, or to restaurants, etc. And take a really good probiotic! The duration of my symptoms from being glutened have reduced to about 1 week instead or 2 after taking good probiotics for a year…
and here I thought I was the only “probtioics pusher” on here…thanks, Kathie! I agree totally. They work wonders for celiac guts.
And, wow…that your CLL is gone. That’s truly amazing–and inspiring. I am very happy for you.
Last time I ask…promise. What brand of probiotics do you take? It’s time for me to get on board.
You can ask as many times as you wish….because I will still keep telling you until I have you converted. 🙂 LOL
I have no affiliation with this company, I promise. I just know they work.
Custom Probiotics.
I use the 6 strain multi-blend. A little scoop in water every morning first thing.
http://www.customprobiotics.com/custom-probiotics-six-cultures.htm
I am sorry to hear there is an NYC restaurant that might not be telling the truth about their gluten-free menu. I just ask you and Jennifer to be very careful before “outing” anyone and do your research. Running a restaurant business in NYC is very difficult. Unfortunately, I’ve heard gossipy stories before that have actually put GF vendors out of business due to competitors planting misinformation in local blogs about false gluenting. I am sure you will do your homework, but I just ask as a NYC Celiac that you give us the facts (which I am sure you will) Thanks, Dude!
Absolutely Erin. I would never “out” a business unless I had some serious facts behind it. Although Jen E. is certain, I’m holding out until we get more info. We’re working on it.
On a side note, I may be coming in for a day in mid August. Hopefully you will be around and we can meet for coffee/lunch.
I think the only thing you can do is to start up a gf certification program for restaurants…. that’s the only way to get out of the rumour mongering, etc. It would be a big business boom to restaurants too, I think — I know I’d eat out a lot more if I knew a resto actually knew what GF for a Celiac was.
Re: the gossip story—I almost can’t believe that someone would do that to another business owner, but I guess it’s a cutthroat world.
I’m curious to hear about the NY restaurant, too, assuming it’s true that they’re lying about their menu. Such a bummer…you can’t trust anyone.
I actually ran into a similar problem yesterday while at a Ghirardelli ice cream parlor. I asked the supervisor which ice creams would be safe for me to eat. She goes “well, no waffle cones. I don’t know what else you can have though. What would you like to order?” So I replied “Look, I can get very sick if the food has or is cross contaiminated with wheat. Can you please go back there and look to see what is gluten/wheat free with the ice cream” She then stomped off and 2 minutes later saying “Well, chocolate or vanilla. I don’t really know or care”
Yeah, I was pissed. >.<
Write a letter to the management. Give the date, time and her name.
There’s a Gelateria chain in Italy called Grom. When we mentioned that we were Gluten Free the server stopped scooping, washed her hands, pulled down a separate plastic tub of cups and spoons and got a cup out for my daughter. Then, they double stack each flavor, so she would pull up a container that was used for the general public, and scoop a flavor out of a newer container that was only used for gluten free customers. When she went to all that trouble, my daughter and I almost cried. It is nice to have a good experience with people that get it. Sorry the Ghiradelli people don’t get it.
Love this story! 🙂
I always hear fantastic stories from GF people who are traveling in Italy and Ireland.
They GET IT.
This country needs to catch up in all arenas: research, diagnostics, follow-up care and education/awareness.
Chris,
Thanks for the recommendation. I love gelato and have been dying to travel to Italy again (it’s been 14 years since my last trip!)
Jess
It is possible to travel safely. I do it often–with a Koolatron cooler in my car and I dine out only in places that have been vetted by other Celiacs/GeeFreers on Find Me Gluten Free.
I have attended a wedding and dined safely. I spoke to the mother of the bride (my cousin’s wife) and she spoke to the caterer. Turns out, there were 6 GFers going to the wedding. When I got there, I verified everything with the wait staff. They could not have been more accommodating. I brought some homemade GF cookies for anyone who was also GF so we could have dessert. (and thank the heavens Booze is GF) 🙂
I would never rely on airlines to get it right. Bring your own food.
Never rely on institutions to get it right (hospitals are notorious for screwing this up, and hopefully, none of us will ever be incarcerated!) Have someone bring in food for you if you need to be hospitalized.
If you have no one you can rely on, call a local celiac support group (the hospital can tell you how ot get in touch) and tell them you have a special circumstance and could use an assist. I cannot imagine a fellow celiac not coming to your aid.
Just shaking my head in disgust at the BlogHer conference story.
I mean, this isn’t rocket science for pete’s sake. Any chef knows how to exclude gluten/flour from a menu. My friend does it all the time. They know the ingredients inside and out and how to sub them.
It’s just plain laziness if it happens during a catered event. If it had been peanuts and everyone with a peanut allergy keeled over with anaphylaxis, there’d be a helluva lawsuit.
We have to keep educating. That’s the only way to combat the ignorance.
P>S> I hope you will tell me(via email ) what place I need to avoid–you know I go to NYC often. 🙂 thx, buddy!
Hi IH,
I ditto your advice on using caution eating GF in a hospital. I had my 4th child at the hospital where I work at last year. They do have GF options and the GF bread is baked at a local bakery which I know well. I ordered a GF lunch tray after having a baby and my GF sandwich arrived on regular bread. Had I not recognized it, I would have eaten the sandwich and gotten extremely sick 1 day post partum, which would have been a total nightmare. It was a total wake up call to me to not take any chances and to always bring and eat my own food at the hospital.
Jess
Let me give a thumbs up to my local Philadelphia ice cream place which has a sign on the wall noting which favors are GF. They scoop Basset’s ice cream so its good stuff.
I’m allergic to gluten, among other things, so tell people I have “severe food allergies” to be taken more seriously (like folks who die if they eat peanuts) and avoid the whole GF trendy thing. It’s still buyer beware since alot of restaurant and hotel staff don’t know all ingredients in a dish.
I use the term “severe allergy” all the time. I know it’s not educating people, but my goal at that moment is not to get sick.
So frustrating! Especially when you’re traveling and can’t trust a single thing.
Also, I’m a bit scared of the whole Britney getup.
lol 🙂
yeah, that Britney thing…is just wrong
he may have to rename the blog GlutenDrag
Finally somebody mentions my chic Britney outfit. Ironically, I think I was diagnosed with celiac that week and the Halloween party was the first one I went to where I couldn’t eat anything. It was so surreal. Thankfully they had vodka.
Oh…and I still have the fake boobs. Don’t ask my why.
whatever blows yer skirt up, kiddo
We need a simple test kit when eating out or at friends/family to detect gluten. I’ve used the Eliza test kits before but I was at home. I got glutened eating at a Mexican rest. Who swore that there tacos where 100% corn NOT
I had the Eliza kit, brought home part of my dinner after i got out of the hospital i tested the food and viola the left overs tested very high for gluten. The manager was very apologetic but having the proof that there was gluten in the meal really got his attention.
But those tests are expensive.
FYI bob’s red mill tests up to 19 pbm on their gluten free products, and labels them GF. I called them recently to ask about their GF products. Why can’t we get 100% GF? I guess that is a rhetorical question.
🙁
Jules,
Which BRM products test at 19 ppm?
I have never heard of this.
thanks, IH
Okay, never mind, hon…..I see what you mean..I read the statement on the website.
Well, that’s standard for GIG certification. Under 20 ppms. Safe for celiacs, which has been researched ad nauseum.
There is no such thing as 100% GF, in all honesty.
But these certified GF facilities— are the best it gets.
However, you can not eat any of their products that does not specify GF they are NOT from a dedicated facility.
Currently on Lanai trying to get back home but FLossie is causing some problems!
But that’s the whole point, dear Jules
Only get the ones that are labeled GF! 🙂 they are made in a dedicated facility.
Stay safe. Flossie looks like a crazy woman!
IH,
I called them about a month ago asking about their white corn grits b/c the package did not say GF. The gal told me they were processed in a facility that also produces wheat so I should not consume them. Then i decided to ask her how many pbm was in their GF products and she said they tested at 19 pbm. And that obviously gave me an AHA moment. That amount bothers me
But, it shouldn’t, Jules 🙂
That is the level determined safe for celiacs that will not cause damage.
There is a ton of research on this. Under 20 ppms. Safe.
All cerified GF products fall into this standard.
Not just BRM. I use BRM products all the time and I have no issues at all.
I think any company that has a dedicated facility (as they do) and produces quality products is a very good thing. We are fortunate to have them making safe products for us.
If you are not comfortable with them, do not use them , of course.
… but please read the research so you know why under 20 parts per million is safe.
http://www.glutenfreediet.ca/img/Fasano_letter.pdf
http://www.glutenfreedietitian.com/newsletter/how-much-gluten-is-20-parts-per-million/
First, Gluten Dude, this post and all the comments are a great discussion as always. I just came off a vacation week of several aargh dining experiences. In addition to the delayed flights and drive home, that’s probably why I’m still awake. Being glutened often gives me insomnia. Or sometimes it makes me sleep like a dead person. Mercurial gluten. 🙁
Second, I’m going to agree with Aloha Julie’s concerns. When the FDA called for comments last time around and shared the data available to date (from existing studies), it shared the May 2011 FDA internal report by the Office of Food Safety–a Health Hazard Assessment report–which was a 93-page analysis of the available information on the clinical safety of gluten, in an attempt to define a safe level of gluten consumption. The FDA report is a revised version of a 2008 draft, and includes input from a December 2010 review by an external expert panel. The final sentence of the FDA Health Hazard Assessment report (Ref. 2, p. 46) states that: “In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus, also protects the most number of individuals with CD from experiencing any detrimental health effects from extended to long-term exposure to gluten.”
My friend Cheryl Harris of Harris Whole Health and the Gluten Free Goodness blog stated: “However, I feel like the most important job of the FDA is to explain the gap between the proposed 20 ppm and the safety report’s recommendation of 1 ppm. According to the Federal Register: “Currently, analytical methods that can reliably and consistently detect gluten at levels lower than 20 ppm do not appear to be available. In addition, it may be difficult or infeasible for food manufacturers to meet a lower gluten threshold level or that meeting a lower level could increase their food product costs. As a result, fewer and/or more expensive GF-labeled foods would be available to individuals with CD, placing them at higher risk of developing serious health complications from CD and other related diseases.” Cheryl went on to point out that a number of organizations (CSA, GIG’s GFCO, etc.) test below 20 ppm so there must be reliable testing measures available right now. (See post here: http://www.gfgoodness.com/2011/08/07/gluten-free-labeling-an-update-from-the-aug-2nd-teleconference/)
I consider myself among the “most sensitive” individuals and react to Bob’s Red Mill “gluten free” products and some other brands as well, even ones that shared their testing results with me when I questioned their gf status based on my clear gluten reactions. I reacted to one company’s products that tested 2.5 ppm and another that tested 0.5 ppm. Today’s experts will say that the testing was only accurate to “less than 5 ppm.” Okay, I’ll go with that, but even then, I’m one of the “most sensitive.”
And the experts know there are folks who are much more sensitive. Dr. Fasano stated in a 2011 interview with Gluten-Free Living: “Of course we know there are people who are extremely sensitive, but you have to make the rules for the vast majority and I would say 20 ppm covers the vast majority.” (See full interview here: http://www.glutenfreeliving.com/Browse/file/GFL_Fasano_interview.pdf)
I think time will prove that there are more and more folks who are in the sensitive category and the value of that Health Hazard Assessment report will be shown. I see many folks who are consuming more and more gf products that meet the less than 20 ppm standard and they are starting to have more and more health issues. In many cases, these folks are not even tying the issues to consuming gluten because they are consuming these products on a daily or weekly basis and with such an ongoing consumption, they are not having immediate/obvious gluten reactions, but rather an ongoing level of “unwellness” or new issues like joint pain when they previously only had GI symptoms, so they don’t see their symptoms as gluten related.
Shirley
I am also very sensitive to trace gluten and cross contamination
and I agree with your many valid points, Shirley. I also wish there were a better standard of measurement. But I use those products sparingly and therefore, do not expose myself to high thresholds of possible trace gluten.
You also said this:
“I see many folks who are consuming more and more gf products that meet the less than 20 ppm standard and they are starting to have more and more health issues.”
and I’d like to point out that Dr. Fasano and other celiac specialists also say the 20 ppm is safe–with the caveat, of course, that people do not consume vast quantities of these “GF products”.that may contain these small amounts— as it is cumulative. This could account for people not feeling well.
That second article I linked to explains threshold levels.
Naturally, if people consume too many packaged items that may possibly contain these trace amounts, instead of focusing on a whole foods diet, full of veggies, fruits, meats and fish, they are going to be taking in a much higher dose than is considered safe..
Someone very wise once said to me “There is no such thing as zero gluten. We live in world that cannot possibly be “totally gluten-free” or free from cross-contamination because we live on Earth– which is a “shared facility”. He’s right.
That’s our reality, I’m afraid.
if you want certified corn grits
http://www.nuts.com/cookingbaking/grains/corn/grits-gluten-free.html
“We are Certified Gluten-Free by the Gluten-Free Certification Organization (GFCO). The GFCO certification meets more stringent requirements for gluten-free products than federal guidelines. Certification assures that the product contains less than 10ppm gluten (5ppm gliadin).”
No testing method is available that measures to zero.
Thanks IH, I do miss my grits!
Jules,
I hate to think what you may pay in shipping charges, but they are some darn good grits!
xx
I’ve been told by United Airlines that even though they try to do their best, it’s recommended that Celiacs bring their own meals. My questions is whether I get a discount for doing so!
It must have been the week of bad GF mojo. At a very reputable restaurant known for using local fresh ingredients and a very knowledgeable wait staff, I went thru my usual explanation about my extreme sensitivity to gluten (new utensils, fresh gloves, avoid cross contamination, etc). However, to my shock, the fish came back with the beer-based glaze. When the waitress caught the mistake and took it back to the chef, he said “a little bit won’t hurt”. Needless to say, I got a free meal. Then, this past weekend, I went to a BBQ toting my GF meal when a friend had actually prepared a delish GF chicken. YET….she was drinking BlueMoon (a wheat beer). When I asked why, she said they eat GF when they can for health reasons, but sometimes it’s just too hard. OMG, I thought my eyes would roll out of my head! BUT…at a little place that I’ve never been to because I assumed they’d never get the GF thing right, turns out, they made me a fresh mai tai (no premixed crap), had gluten free buns for the burgers and even have a dedicated fryer so Celiacs can enjoy their fries. Made my day!!! Gotta take the good with the bad.
I have SERIOUS lunch box envy. I’m gonna be needing me an upgrade.
My stance is mostly to be delighted if I can get good gluten free, but always prepared in case I can’t. My food usually looks better, and I have got used to eating things exactly as I like them prepared. I am about 98% paleo, and couldn’t be happier with the improvements in my health.
PS I found the Britney thing strangely attractive, so maybe I need to get out more….
“I found the Britney thing strangely attractive, so maybe I need to get out more…”
Too funny 🙂
The travel piece… it’s such a nightmare. (And April… the title of your bomb is Gluten is My Bitch… you’d think people would know not to **** with your food!) I’m an academic – and a social work academic to boot – but it took me getting taken out of our big national conference with a celiac attack for the national committee to get a clue.
I have to travel – and travel light. Every conference, every talk I give, every school I visit… they are all risky. And it’s not like Portland, where there’s a WF in every major neighborhood, dedicated food trucks, and BRM’s outlet store five miles south of the city limits… I’m on the job market this year and one of the key things I look for is how well I am accommodated…
I meant blog, April… **** auto correct!
I like “bomb” too.
And GD, I raced (well, as fast as the shuttle bus would take me) back to the hotel and proceeded to throw up for about an hour, get a migraine and pass out for a bit. So luckily, I escaped the three weeks of sick that would have followed. Nice. Gluten anorexia.
Still shaking my head at this whole mess you guys went through. You poor babes. argh!!
(still love, love, love your blog title. I know. I tell you that every time.:) )
I’m pretty sure I used the term “forced bulimia” when I was describing what they had done to you to the catering AND banquet manager.
I was served mislabelled cous cous, cake, barley stew, and more at my university (on numerous occasions). The head chef denied that the couscous contained gluten and later I asked one of the wash-up assistants for the bag and wheat semolina was the top ingredient. More on my awful GF experience here:
Absolutely ridiculous…
Oh come now, ICM–still telling this story?
Time to give it up..
Everyone, this is ICM, aka IM who claims to have celiac and who takes Dr. Wise’s gluten relief magic pills, eats gluten and blogs about it. (Jason’s pal)
Kiddo, you cannot expect sympathy from the GF community, if you continue to do this.
I think you are just mocking us, IMHO.
Really, when are you going to just give up the phony sob story?
Dang…the son of a gun got me. Persistent little bugger.
IH – Look like you are helping him promote his sites? He just got what he wanted, which was to get his links out there and promote the product. Remember – a lot of these people get paid for each time the product is mentioned or a link is put on a FB or Blog.
Of course I know IH isn’t promoting his sites but – negative publicity is just as good on the internet as nice comments.
True that. Lima! 🙂
I was showing the Dude’s community these links so they could see what I was saying, but you are so right.
GD, maybe you should edit out the links? your call.
I opened a copy of Clean Eating Magazine a few weeks ago – ran across a recipe for GF Gingerbread. First ingredients on the list? 2 c. whole wheat flour. Dumbshits. People who don’t know any better make that kind of stuff, then serve it to my Hugs, who eill be sick for a week.
And no, not barfing; he gets the neurological, arthritis and emotional parts of the gluten poisoning, not the tummy bits.
We were both sick all week after our last GF pizza – a place that uses crusts from a dedicated facility. They must unwrap the “safe” crust and flop it on a floured board.
I have a gluten intolerance. My mother think’s it’s all in my head, It’s hard enough to deal with it, I don’t need my mother always giving me a hard time about it and trying to coax me into eating something that contains gluten. She’ll say things like, “I worked so hard to cook this. It’ll hurt my feelings if you don’t it eat any.”
She’ll even slip some flour containing wheat into some dishes without telling me without me knowing, then later when I’m not feeling well and itching all over, she’ll admit that she did it.
I tell her all of the time that it’s serious, I really do feel like crap when I consume gluten, but all she does is smirk and says, “Okay.”
I just wish she could understand what I’m going through.. And the stress and anger she causes me does nothing but makes things worse.
Here is something to be aware of when eating out as a celiac:
If the dinner you order comes with veggies, BE SURE to ask how they are prepared. Veggies are naturally GF, right? Well, guess what? I ate at a restaurant in Green Bay, WI., that assured me they accommodate GF diets regularly. I got sick as a dog after eating my delicious GF meal. When I called to ask how that could possibly happen, one of the chef’s explained that they routinely blanche their veggies in the boiling pasta pot kept on the back of the stove UNLESS a customer requests a GF meal, which I did, but they forgot, and so I got poisoned.
Crazy. You learn something new in this celiac world every day.