Since my celiac diagnosis, I’ve always struggled with the fact that pretty much the entire focus of celiac disease is on food.
When I went to the Celiac Awareness Tour in Philly last month, it was pretty much all about the food.
It was just vendor after vendor trying to get my business.
Where was the “Celiac Awareness” part?
But I’ve come to realize that perhaps this is the way it needs to be.
There is no cure for celiac disease. It’s a life-long affliction.
And gluten-free food is our drug. It keeps us alive. And because of that, I get it.
But you would think that because of this focus, we could avoid incidents like the following (from a comment on yesterday’s post):
Six months ago I was with my family at a Red Robin in Charlotte, NC, and was ordering from the gluten-free selections. I quizzed the waiter who obviously knew nothing about gluten or cross-contamination so I asked to speak to the manager. The manager answered the questions right, indicated that they were trained in safety, and told me hamburger was cooked on a separate area. She aso added that their GF hamburger buns were the tastiest she had ever had.
My burger came out and before I took a bite I happened to notice that my bun had little sesame seeds and looked just like everyone elses. I called her back to question it and sure enough I had the regular bun. I then had to go into a LENGTHY description of why they could not take that burger and merely switch buns. She seemed annoyed. Ultimately my trust was blown so I watched my husband, our daughters/spouses, and my granddaughter eat while I held the four-month-old granddaughter and ate nothing..
They felt bad, I felt bad, and after a fun day our evening ended on a sad note. Even worse we only chose Red Robin because my loved ones were searching for a place where I could eat safely. They wanted to eat at a different restaurant..
I want to tell the “celebrities” who adopt this as fad diet and food preparers/servers who think this is a “celebrity fad diet” that THIS is our life..Our problem doesn’t just affect us, it affects everyone who is in our lives. Thankfully I noticed it before I took a bite. If I had been the only one getting a burger, I would have never known to even question the bun after the manager’s glowing description.
I know…mistakes happen. But we simply cannot afford to have these mistakes. We can’t.
When we eat at your restaurant, you are like a pharmacist filling our prescription.
You must fill that prescription exactly as required or your “patient” gets sick.
Do restaurants want this responsibility? Probably not.
What’s the solution, besides celiacs never eating out? I don’t know.
Do you?
Yes the solution lies in a new generation of
chefs and restaurants going the distance and
not only cash in on the current “fad” aspects, but
work the gluten free food properly.
Also on the Celiacs part I am still boggled why you would expect
chains and fast food joints to be able or interested in serving us
at all. Especialy when these places make their business on
very glutenous things.
All questions in my mind.
L
If they were smart they would cater to our needs and make $$$$ but alas they don’t and so on we go spreading awareness until one day, hopefully in our lifetime, they understand and we can finally have a meal without fear of getting sick.
We could have a rally like the one Jon Stewart had awhile back. All the big organizations and groups could get together and have something cool and educational. And a ton of safe gf food…
I think I need to go eat now…The hunger is speaking for me now! 😀
I totally understand how this Woman feels. Something similar happened to me at BJ’s last week. My friends chose it specifically for me. The waitress acted and manager acted as if they would be taking every precaution. I asked if the salmon was wild or farmed (if farmed I didn’t want it) Also pleas check balsamic for carmel color (I NEVER eat it, if it does, just in case). They brought out my salad WITH the farmed salmon on it and the oil and vinegar I was going to replace balsamic with was actually balsamic. Ugggg, so frustrating. I sat there hungry, while my friends felt stupid for continuing to eat. But whats a Celiac t’do?
Balsamic vinegar is safe for consumption.
http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html
Some lists on the internet really need to be updated so people get accurate information.
cheaper quality balsamic may have carmel coloring in them. Carmel coloring can be glutinous. I just don’t trust a restaurant to be using really expensive balsamic since their output is so high.
I noticed the BJ’s (if it’s the same one) now has a GF Pizookie. I have missed that dessert for so long, but I haven’t yet tried it. Just like you, it only takes a little to put me into a bad case of stomach distress in which I have to remind myself to, uh, never trust a fart. 🙂
It was the same BJ’s. I can’t even tell you HOW hard I’m laughing and how much I relate :0
It will come, but not in my celiac shortened lifetime. I hope and pray it is in yours.
There are exclusively Celiac safe bakeries doing well and some even flourishing. Someone will come up with Celiac safe pizza, pasta, stromboli and calzone recipes that tastes fantastic and allow that restaurant to be exclusively serving Non Gluten items. And, it will be owned and run by Celiacs.
I do not know where you live, Rick, but there is one! It is run by a celiac, and it is Sherry Lynn’s in Latham NY.
She does not make calzone or stromboli yet, but she has pizza, squishy rolls, mac and cheese, lasagna and baked goods down to a science.
All GF –made in a dedicated kitchen. Even the french fries are safe.
I watched a little boy eat his first brownie one day and the pure joy on that kid’s face—well, let’s just say we ALL had to wipe our eyes.
I cried myself the first time I ate her french toast. :>)
I love this woman’s dedication! We need more places like this.
It will come.
I agree with Rick, I think the best we can hope for are GF restaurants where we can eat safely every time without the stress and worry. My husband hates the fact that I can’t eat out, but when we are at home, he eats totally gluten free and doesn’t mind it at all. Mind you, I haven’t been adventurous and made a bunch of gf treats yet because what I have attempted from scratch has failed pretty horrendously (and when you are used to being a great baker, that can be pretty well ego-shattering!).
I used to love bread, gluten was a huge part of my life before last year, and while I miss bread and crackers and all those quick and easy things to eat, what I miss the most is pizza. It would be a dream come true to be able to eat at a GF pizza parlour where you knew that flour had never been!
You can bake delicious treats again! After months of disappointing failures, I discovered the following all-purpose flour mix you can make at home & substitute cup for cup in your favourite recipes. So far I have used it to make cookies, brownies, coffee cakes, muffins & pancakes. Just make sure the flours (as well as any baking soda/powder) that you use are gluten-free & not from bulk bins! Combine 1 cup sorghum flour, 1 cup chickpea flour, 2 cups potato starch (NOT flour), 1/2 cup coconut flour, 1/2 cup brown rice flour, and 1 tablespoon xanthum gum. Mix well & store in an airtight container, refrigerated, for up to one month. Happy baking!!
Lisa, if you’re looking for treats, check out Gluten Free Betty. http://www.glutenfreebetty.blogspot.com/ Her recipe for red velvet cake is ten times better than the gluten equivalent. Just put in a few extra heaping tablespoons of cocoa. 🙂
Not everyone can afford it, I know, but your best bet for dining out is to go to more upscale places and NOT fast food chains. Do it as a treat when you can afford to do it. Chefs who cook from scratch with plain ingredients (and not the same stuff all piled onto one giant grill) are going to be your best bet.
Fast food places simply do not have the time to be extra careful.
That’s why they are called FAST FOOD joints. They make money by pumping out as much food as they can. That server you are putting your trust in —is some college kid looking to make fast money. He does not really care about “gluten” or our needs.
I will say that BONEFISH GRILL did right by me in Florida. I wish they were here in upstate NY. They are trained well and take it seriously.
Diners, fast food joints, buffets, open salad bars and cafeterias–are going to be the worst places for cross contamination.!!
I mean, look at what we do in our own homes to ensure our safety!
We had to de-glutenize/replace everything after DX.
People who co-exist with gluten-eaters have to walk through minefields everyday. I do not know how you guys do it. Kuddos to you!! It takes one stray crumb to make me miserable.
So, how on earth can we expect a place like a burger joint to be truly “safe”? They “get it” —BUT they really do not follow through, from all the stories I hear.
Sorry guys, but that’s the truth.
We NEED fully GF, fully DEDICATED restaurants. I only know of one–here in Latham, NY.
Totally agree Irish that cheap joints are pretty much out of the question for us. Sad but true. The nicer establishments will put more time/effort into your meal.
I agree. Also, because those establishments are concerned about food over product, I feel their wait staffs are much more educated about allergies and disease.
This story saddens me. I have a gluten free bakery that I run from home. I’m currently looking for a store front to open a gluten free cafe where it’s safe for everyone to eat tasty sandwiches, soups, salads…etc. I was trained classic French cooking, I know what I’m doing. I have gluten intolerance, I’ve been in similar situations like the story above. I just want to open a place that’s safe for all of us.
When I work the Farmers markets with my baked goods, they sell out fast and people thank me for doing what I do. It brings tears to my eyes every time because I know, I know.
Please tell me you’re in Bucks County PA…
Sorry no, Fort Lauderdale, FL. Lately I’m getting calls asking for soup and sandwiches and my heart just breaks. They aren’t on my menu but I make it for them anyway.
I’m with you on Bonefish Grill, IrishHeart. I ate there once in Savannah, GA and loved it. But unlike many of you, I do not get sick if I get glutened. I have to constantly ask other Celiacs if they find a restaurant safe to eat at before I eat there (in most cases, occasionally I just take my chances which I know is bad).
If any of you ever get to Asheville, North Carolina, definitely eat at Posana. It’s a completely gluten-free restaurant. They don’t advertise as such (I guess they don’t want to scare off regular diners, that’s what they told me) but the food is fantastic. Also Rose’s Wheat Free Bakery in Evanston, outside of Chicago. They are in a completely gluten-free facility. The owner and her Mom have gluten intolerance.
I am enjoying this blog so much as sometimes in this celiac world of our one feels really alone. I have been diagnosed for seven years but suffered for many years before it finally came to light. I am finding the simpler I order when eating out the safer I am. It is so difficult as sometimes I will order the same thing and be glutened and not be able to figure out why. It is so amazing that the general public doesn’t sometimes even know that bread is made from wheat or that it is an possible ingredient of so many things.
I am also wondering if any of you have trouble with xanthan gum or any of the other “gums”. If I eat more than two slices of bread or pieces of something that has xanthan gum I have bowel problems almost as bad as if I am glutened. I am happy to see that some of us are now working with ground chia and flax seeds as alternatives to xanthan gum in baking.
I am finding I am sucessful in this gluten free journey if I stay away from processed foods even of the gluten free variety. Some of the
gluten free products are beginning to have additives and words I can’t pronounce as the main stream companies jump on the gluten free profitable band wagon. If I can have my vegetables and fruit, meat and fish and a few gf candy bars now and then I don’t miss the bakery goods so much.
Good cheer everyone,
Hoby
Eat Naked Hoby. Eat naked.
Yep! Except for butter which is not necessarily good for me. smile But definately a necessary evil. Can’t give up eveything after all. smile I also use lemon and lime to feel less naked and rice vinegar also adds flavor. Just this morning I chopped and froze three trays of herbs from pots on my patio which I’ll bag later for soups in the fall.
I think there is definately a learning curve with being celiac. At the beginning I had to educate myself as I was in a very small town in Oregon and my primary care dr. when notified by the gastro dr. told me “well, I guess all you can eat is vegetables”. She sent me to a dietitian who was minimal help and then my online research began.
I do well generally but it is only with being very careful if I don’t eat at home.
Hoby
Butter is good!!! :>) and we need healthy fats: coconut oil, avocado, extra virgin olive oil and safflower oil.. (omega 3s)
I should clarify, when I said naked and unadorned, I meant no weird ingredients and preservatives in the Packaged GF stuff that is available.
I can create nutritious and gourmet GF fare that often has many ingredients, but ALL of them are fresh, pure foods and spices and herbs.
I also make a decadent flourless cake that rocks.
GF eating can be very rewarding 🙂
One emaciated, I now have to watch the calories. There is much to be said for healing the gut.
that word should be ” once”
(sorry for the typo–hate those!) I hit reply too soon. I am used to sites where I can edit. LOL
Unadorned and naked is best :>)
But homemade salsa and sauces are okay!!!
My rule: If I eat something from a package, it should have no MSG, soy, HFCS or more than 5 ingredients—- and certainly, never eat anything I cannot pronounce! 🙂
I think the best solution, aside from not eating out, is to eat out at restaurants where the waitstaff and chef are educated and aware. I know that’s easier said than done. But I often call ahead to make sure the kitchen will be able to accommodate me. I also steer clear of chain restaurants. Their food is mass-produced and their MO is not usually about serving high-quality food, but just getting people in and out. And that’s when the majority of mistakes happen.
I also use the word “allergy”. For all intents and purposes, we do have an allergy to gluten. Its just not manifest as an anaphylactic reaction. The term allergy seems to be taken much more seriously than “intolerance.” And since I cannot eat dairy or soy, I let them know that I have “multiple food allergies” and they usually take me seriously. If I ever get a waiter that seems to be brushing me off, I ask to speak to the manager or chef. Or leave.
I don’t know if any of that helps. I know that I am gambling every time I eat out, even in places that I’ve eaten safely before. But I do think that awareness of safe kitchen practices is increasing. When I first went gluten-free 10 years ago, no restaurant I visited had ever heard of gluten.
I agree with Heather regarding the use of the word “allergy” in a restaurant setting. I discovered early on that most waiters do not understand what Celiac is and barely understand gluten (many have indicated they thought that gluten must be related to sugar…..no, that’s glucose – big difference). Or…..if I try to explain that I cannot eat anything with gluten – I commonly received the….. “oh, like the Atkins diet” response. Anyway….one thing I believe ALL wait staff seem to understand is allergies….especially when they think of peanut allergies. They know that if someone has a peanut allergy – they could stop breathing at any moment and so they take that comment much more seriously. Let’s face it, none of us want to spend our nice evening out to dinner wasting time explaining the nuances of Celiac Disease to unaware and uninterested waiters. So, instead…. despite it being ‘inaccurate’ – I usually tell waiters that I have a severe allergy to wheat….and then I finally get that nod of understanding from them. Yes, I absolutely wish that the world would understand the plight of the Celiacs – but until then… I need to be able to say what will make most individuals understand and will allow me to enjoy a safe meal.
I almost always use the words “severe allergy” when I’m out. Seems to connect with the staff a bit more.
Unfortunately even pharmacists make mistakes — scary to think about that!
and speaking of that, there is a lot more to worry about than just food, right? Medications, soaps, lotions – lots of things can contain gluten!
I tried to figure out if my medicines were all gluten free but it has not worked so far. I emailed a few companies but did not hear back. I guess I will have to start making some phone calls. There are some gluten free medication lists but none are comprehensive. I take about 7 medicines a day, so…