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Gluten-free A Restaurant Cook's Perspective


ConcernedCook

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ConcernedCook Newbie

Hello everyone,

I am a cook and a culinary student and recently started doing research on celiac disease for one of the classes that I am taking. In an attempt to procrastinate from typing a packet of gluten free recipes for the restaurant I work at I started reading this board and I'm a bit concerned about how difficult it is for people to eat gluten free at a restaurant. So, I thought some advice from the other side of the kitchen door could be useful.

First thing first, you have to realize that restaurants want your business. The success rate in the business is too low to exclude anyone. The second thing to realize is that when you tell your server that you are a celiac (or diabetic, or allergic to shellfish, lactose intolerant, don't like potatoes, whatever) and they tell the chef you have just created an unhappy person because they have to generally go off menu and actually think about cooking. Also, you've probably at least annoyed anywhere between 3 and 10 cooks because when the chef isn't happy they aren't happy.

Still, at any QUALITY restaurant, the chef and cooks will quickly get over that anger and start cooking for you. Now, this may involve a quick scan of the food on hand and the creation of some jury-rigged meal, but at better restaurants there may be a standard gluten free option that the kitchen is ready for or other dishes that can be prepared easily and without gluten containing products.

In terms of cross contamination, it is a serious concern at, like I said before, quality restaurants. Usually, we are concerned with accidentally mixing things like raw meats and cooked products, but it is just as easy to be careful about other things as well. Typically new pans are used for every application in order to keep flavor of the products true and cutting surfaces are wiped if not changed after every use. large static pieces of equipment like griddles, grills, and fryers are more difficult to clean, but it can be done in the case of griddles and grills and a pot can be filled with clean oil if something needs to be fried for someone with a dietary limitation. These are all things that a quality restaurant will do for you.

Just a few examples from my restaurant. First, any dietary restrictions are told to the managers, our waitstaff, our chef, the kitchen staff, and are posted on a special board just in case people forget. Second, at our menu meeting, where we discuss daily specials, any allergies concerning each dish are discussed and modifications that can be made to meet dietary restrictions are mentioned. We take this very seriously because we want our guests to be happy and come back. There's a saying that if you give a guest the best experience of thier life they'll tell one friend give them a bad experience and they'll tell ten and it's remarkably true.

So, how can you tell if you have found a QUALITY restaurant. Well, it takes some research. First, I would suggest taking a look at who they're buying thier food from. If you see big 18 wheelers or shabby looking little trucks and vans at the loading dock that's a bad sign. A nice clean truck with the purveyor's name on the side on the other hand is a good thing. Take a look at the restaurant's bathroom. If it's very dirty then think to yourself that they let you see it... you don't always get to see the kitchen if you get my message. Quiz your waiter on the menu, not just about gluten but about products that are used. If they seem knowledgeable then you're probably at a good place. I would also suggest eating towards the beginning of a service period since you will probably get more attention than at the midde of the night when the kitchen is busy or the end when everyone wants to go home. Finally, carry one of those little cards. They may strike fear into the hearts of chefs and cooks alike, but they can definitely help to make your limitations clearer.

My most important piece of advice about restaurants is to tell ten people every time you have a bad experience. If business starts slacking off because they won't take care of people the restaurant will either close or wake up and take notice. If you're feeling charitable tell more than the one person when you have a good meal. I would sure appreciate that.

Anyway, if you have any questions or want to tell a cook how he can better serve you then this is the opportunity. For now, though, it's time for me to type some recipes.

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lovegrov Collaborator

Thanks for the advice.

"My most important piece of advice about restaurants is to tell ten people every time you have a bad experience. If business starts slacking off because they won't take care of people the restaurant will either close or wake up and take notice. If you're feeling charitable tell more than the one person when you have a good meal. I would sure appreciate that."

So true. One of the hottest restaurants in my area a year ago is dead now because they slacked off and started serving substandard meals. When it didn't get better, people quit going.

richard

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ConcernedCook Newbie

The telling people thing is so important. I hate to admit it, but restaurants are fairly mercenary and everything is driven by the bottom line so even small numbers of loyal guests leaving is a serious concern.

I also forgot to mention a little bit of philosophy that I recently had a chef share with me. Something that I've taken to heart and I've seen other people embrace too. The fact is, that people who have limited diets seriously drive restaurant choice. Now, the Chef used vegetarians as an example, but I think it can be even more seriously applied to celiacs. If my restaurant can take care of a celiac (as in give them fantastic food that helps to keep them healthy) then they will be loyal to my restaurant. So, the next time they go out to eat with thier non celiac friends they'll bring everyone to me since I can give them a good meal. The friends, well they have to go along with thier celiac friend and I'll give them a fantastic meal too. Still, my one loyal customer has brought me 4,5, 6 people just because they know they can enjoy my restaurant safely and hopefully the friends will come back too. That is just about the best marketing I can buy.

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celiac3270 Collaborator

Thank you for all your tips, ConcernedChef.....it was quite interesting to read all that and I agree that telling people about bad experiences -- or good -- can really influence the restaurant's business. The restaurants, particularly, the chain restaurants that serve gluten-free food are getting a lot of attention on these celiac boards because they are accomodating. Names like "Outback" and "PF Changs" just fly around the board and when one in two hundred have celiac, that's a lot of business they are, or will be soon be getting. It doesn't take much; just a few extra cooking things, supplies, and letting potential customers know that you'll accomodate them. Anyway, thanks for posting that -- it was interesting and helpful to read.

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hthorvald Rookie

Thanks for your wonderful insight. I recently celebrated my birthday in Truckee, California, at a great restaurant. When making the reservations, I mentioned my celiac disease and asked if they could accommodate my diet. They took the time to read the menu to me, check with the chef, and at the end of the day, I felt comfortable about eating there.

When we arrived, the chef came out and personally spoke with me. I asked him about my dinner choice, which he concurred was safe, but recommended the roasted potatoes vs the mashed potatoes. He said that he had cooked pasta in the same pot and wasn't sure if it was thoroughly washed out or just rinsed before cooking the potatoes. I was very appreciative of that tip.

Finally, he asked me if I carried the cards that explain our diet restrictions. Apparently, he had a patron the week before who also had celiac disease and she presented him with a card detailing how her food needed to be prepared. He thought that was a wonderful idea and suggested that I carry these. I did ask him if that would upset a chef and he said indeed not. That he wanted everyone's business and that he appreciated the opportunity to serve me.

So, that being said, I've ordered these cards and will start offering them to the wait staff to hand to chefs. If they balk or if they can not accommodate me, I will go elsewhere, like any good consumer.

Thanks again for your great, enlightening message.

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capawa Rookie

I would love to know where concerned chef works. If he is in St. Louis, I would go to his restaurant in a heartbeat. :D

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ConcernedCook Newbie

I'm glad you enjoyed my input. I also had a discussion with two of our chefs this evening after work about gluten-free cooking (one our pastry chef the other the chef in our fine dining restaurant) and restaurant etiquette. It was all sparked by a walk in 8-top (eight people at a table) in the fine dining restaurant which we all considered bad form. So, first off, if you're going to a restaurant with more than 5 people get a reservation. I know, nothing to do with gluten-free, but it is greatly appreciated.

Anyway, when we began talking about the gluten-free side of life, the pastry chef made a very interesting statement. Essentially, she said that if someone goes to the restaurant with some dietary restriction that she would need time to prepare for it. I know, sounds kinda obvious, but it was the time she needed that was shocking. For a nut allergy it was fine to just mention it when ordering dessert. Lactose intolerant? when you sit down at the table. Celiac, well then she needed three days to do anything more than a plate of fruit. So, Hthorvald, telling them about gluten-free when you made a reservation was a good idea and I would encourage everyone to do that.

Oh, and sorry Capawa, I'm not in St. Louis. I'm in Montpelier, VT. Still, anyone in the area is welcome at our restaurants. They are Chef's Table (fine dining) which is where I currently work and the Main Street Grill (casual) both are associated with New England Culinary Institute (there is also a bakery in town, but gluten-free isn't really an option there though I know one of the chefs is working on developing some gluten-free products for them too). There are also a bunch of NECI restaurants in Burlington, VT should you work there which also have similar philosophies. Oh, and thanks for your confidence in my abilities though I have to admit that I wasn't doing anything gluten-free tonight. Maybe I'll pull out a gluten-free special for tomorrow though just for the heck of it.

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judy04 Rookie

Concerned chef,

I'm glad to hear that restaurants are finally hearing about this disease

and I wonder how much is taught in your training? Do better restaurants

keep a supply of gluten-free food, bread or pasta? Also do they go into cross contamination

issues? The town I live in has a culinary school and I wonder if they are teaching this? I haven't had much luck with dining out, wish I could.

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ConcernedCook Newbie

Judy,

I can't speak for other schools, but New England Culinary does do some training when it comes to things like celiac. Still, it is by no means intensive. Mainly we are taught what various people can and cannot eat and some of the consequences of getting it wrong. Still, I would rate what I've learned as adequate to allow me to safely cook for a celiac so long as I could ask the occasional question. Cross-contamination is something that we worry about with regards to much of our work actually, though gluten generally isn't normally one of the things that I personally would pay attention to. Now, cooking for someone who was gluten-free would change that, but if I'm busy and there isn't any restriction I'm not going to probably even worry if (for example) a bread crumb gets knocked into the shallots. Still, the layout of most kitchens lends itself to separation of products that have gluten to those that don't. In the case of our kitchen we will very often cut fresh product if there is a dietary restriction of some kind and there is ANY question of the safety of the product.

And, while I would have to say that even the best restaurants don't have gluten-free specific foods on hand specifically for that purpose, better restaurants have the means to create many gluten free things from scratch. Now, you might not get pasta (though, I do know a chef who always carries some random flour substitute so that he can make pasta should someone be gluten free), but you can definitely get something that is both tasty and healthful. If you really want a restaurant to keep gluten-free products on hand then I would suggest that you make yourself a regular at the place. Many restaurants will keep small stocks of specialty ingredientsif they know someone will come in and use them regularly. (I think I'm beginning to sound like a broken record about the whole keep going to places that you know will take care of you thing, but it is true).

Anyway, I hope that helps and I wish that i could tell you if the school in your town was teaching those things. Unfortunately, culinary schools are all very different in thier styles of teaching and the curriculums. Still, of the top 3 culinary schools in the country, NECI being one, we are the least academicaly focused (we're very very hands on) so for us to actually have a sit in a classroom type class on something means that other schools most likely have the same.

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Guest ~wAvE WeT sAnD~

ConcernedChef--

First of all, thank you for sharing your valuable information with us. I have yet not to experience a confidently Gluten Free meal at a restaurant.

I was wondering if you could give me some advice. I live in a small town with very few (I doubt if there's even ONE) quality restaurants, such as the three or four star types that have chefs like you who will go above and beyond the call of duty for every customer. I'm glad that some of the franchises (ie, McDonald's) are taking the initiative to begin featuring Gluten Free menus. The only issue is, obviously, many restaurants will, for instance, still fry their fries in the same basket as breaded chicken. I wish I knew exactly how far out of their way a good chef such as yourself is able to go at a local dining place. I realize that at smaller restaurants that making meats, etc separately is difficult. If I encounter a restaurant that isn't as well prepared as the ones you describe, what should I do? How can I fully make sure that the food will be free of cross contamination? I know to a certain degree that there aren't completely definite answers to these questions, but any guidance is very much appreciated.

Thank you for taking the time to speak with us!!!

Help us Beat the Wheat (barley, oats, rye and malt),

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ConcernedCook Newbie

Wave -

First off, you might be suprised by the number of chefs at even mediocre restaurants who would be willing to put something together that is gluten-free. Honestly, thier main problem would be a lack of ingredients that they could use. For example, many smaller, less expensive restaurants buy things like pre-breaded chicken fingers. Better places make thier own (it actually saves them money) so if you wanted a gluten-free chicken finger (there are much better things to eat of course, but this is just a simple example) all I would have to do is run to our protein cooler, grab some of the chicken which we use for fingers and toss together an alternative breading (rice flour, salt, pepper, some fresh ground spices) and crack a few eggs to get the stuff to stick and we're off to the gluten free races.

I should also qualify the rest of this by saying that I firmly believe a taking some risk with my food is a good thing and that I am fully willing to feel a little sick for a unique experience. (I have had serious food poisoning a couple of times because of this) Also, I am absolutely unwilling to take any sort of risk with lesser experiences so no rotten burgers and fries from some shack just because I'm hungry. Sorry, I can miss that meal, and my waistline will probably thank me for it.

Anyway, in terms of eating at restaurants that aren't as prepared, well you're taking some risk but there are definitely tricks to finding foods that you can eat. First, and I can't stress this enough, tell your server that you are gluten-free. Do this EVERY time you go out to eat even if you go somewhere every day and they know you. Also, make sure that you inform them that you don't do this out of choice, but because you'll get sick. That will get the chef's attention because he's probably seen too many Atkins folks and will just assume that you're low carb rather than gluten free.

Second, offer to explain your limitations directly to the chef. Servers are often just college or highschool kids and will sometimes flake on bits and pieces of information. Remember, they forget things that you ordered sometimes. Do you trust them to also remember a bunch of rules (eg, no fryer oil which has been used for breaded products).

Next, try to sneak a peek at the kitchen. Sometimes there's a window in the door, or a separate window or you can just sit and have a drink while you wait for a quick glance through the door when someone goes in or out. Chaos is ok, but dirt, grime or anything alarming might be a sign that they won't pay much attention to your needs. You can even ask to peek your head in. That will probably be met by a "no," but it's worth a try.

Ok, now that you've checked out the place and quizzed the staff it's time to take a look at the menu. First, anywhere that says "NO SUBSTITUTIONS" on the menu should be avoided whether you're gluten-free or not. It just says that they're not really there to take care of a customer or that they're using a lot of premade food.

Next take a look at what's on the menu. There are a lot of things that you can learn about a restaurant from the menu. So many that when i go out with non-cook friends I end up giving the Menu Reading 101 class just because they think it's too cool. Anyway, I'm going to break it up into a few sections.

First, vegetables, there are some obvious things to look for. Sauted and Braised vegetables are probably safe for just about any gluten-free individual to eat. Grilled are, in my opinion, probably safe to eat as well despite what the little cards say. Most grill cooks use separate parts of the grill for different things, one area meat, one fish, one veg, one to toast rolls for burgers... so cross contamination is unlikely, but still possible. Fried veg is probably right out since it will most likely be battered with some gluten containing product and be fried in oil that is used for other breaded things.

Next, meats, this is somewhat problematic, but once again you're probably safe with a saute just make sure to tell them to not flour the meat (it's a restaurant trick to get a nice brown crust). The grill is the same for meats as it is vegetables probably safe, but not 100%. Roasted things, like chicken are also probably on the safe list. Even things like prime rib are probably safe, not the gravy it's served with, but the rib itself is AOK. One caveat, you should ask if the meats are rubbed with any spices before being put on the heat. Some spices include flour as an anti-moisture agent so if they aren't ground from whole then you might ask to not have the meat rubbed.

Starches are pretty easy, look at what they're offering and if it's something you can eat then go for it. Of course, feel free to ask questions and make your server sweat.

Sauces... I'm guessing that most gluten-free folks who are eating out are caught by sauce rather than anything else. I'm going to get a little technical here, but hopefully it will help. There are traditionally 5 "mother sauces" that most other sauces are based off of (less so today, but it's a nice place to start). They are Veloute, Bechamel, Espagnole (brown sauce), Tomato, and Hollandaise. Of those 5, only two are gluten-free those being tomato (think italy) and hollandaise (think eggs benedict). The others would only be made gluten-free by places catering to the gluten-free market. If you see some french name for the sauce on the plate then ask your server what it's mother sauce is. They might not know, but the chef should and if you hear any of the first three types then stay away. Ok, another sauce that you might see is beurre blanc (or beure rouge) which is a butter sauce and should also be safe. Ok, last one, pan sauces which if made correctly should be fine. Still, some places don't make them right. So, here are a few questions to ask of your server, "how is the sauce thickened?" If they say roux then say no to the sauce. "Do you use beurre manie(a flour, butter thickening agent)?" A yes equals a no-go. Finally, "Does the sauce use Demi-Glace?" With a follow on of "How do you make your Demi?" First, demi is a thickened, reduced veal stock and is a cooks secret weapon in making things taste good. Now, there are a lot of ways to make the stuff and most don't involve gluten products, but some do and better to be safe than sorry. Overall though I would lean towards pan sauces, hollandaise, and beurre blanc as they are the most difficult to crosscontaminate.

Now, armed with that knowledge, you can pick and choose from the menu and at least give the cooks some gudelines about what you want to eat. I guess though I could have summarized this all by saying ask questions and lots of them.

So, I have a question to ask of you all. I know cross contamination is a worry, but how sensitive are you in terms of cooking vessels? I have been known to go through 100+ pans in an evening and every one of them (Ok, sometimes one sticks around for a bit and gets re-used to make a sauce if I'm really busy) goes into the dish pit to be scrubbed, washed, rinsed, and sanitized before it is brought back to me. Is that clean enough? Also, we use stainless steel, cast iron, and aluminum pans. Is there one that you have found safer?

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celiac3270 Collaborator

As long as they're well-washed, the pans should be okay. One surface to avoid is teflon--really difficult to remove all the gluten from. It's good to hear that you use that many pots and pans instead of reusing everything multiple times........

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ConcernedCook Newbie

Well, I do my best about not re-using, but like I said sometimes convenience wins the argument. Still, in the case of allergy issues, celiac, etc I always use a clean pan. Also, I personally try to avoid using teflon ever. I recently heard a study where it is one of the top two contaminants in the human body with the other being nalgene (as in the bottles) so I've given up my teflon pans (not my nalgene bottle) in favor of well seasoned cast iron and I'm steadily convincing the other people I work with that it's an awesome replacement. I have a standing bet with them that I can cook anything in cast iron and not have it stick. Unfortunately, I haven't lost yet and they've gotten wise to it so no more fleecing of my co-workers with that little bet.

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crc0622 Apprentice

Unfortunately, due to the same thing that creates that wonderful seasoning, cast iron is a no-no for us! The gluten won't be scrubbed away (and what good cook would scrub their cast iron, anyway?)!

Stainless steel and anodized aluminum is good - easy to scrub clean.

Thanks for all the great info. I do tell everyone I can possibly tell when I have a good experience, Celiac or otherwise! And I try to let management know when a Chef does a really good job, too, even if it means a phone call the next day. They should know how much it is appreciated when their staff goes beyond the call of duty!

Celeste

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ConcernedCook Newbie

Thanks for the info about cast iron. Actually, they are the pans that I usually re-use anyway. Also, FYI in many restaurants cast iron pans tend to get scrubbed and reseasoned every day since it keeps them more sanitary and our burners get hot enough to season a pan in about thirty seconds. Regardless, I will pass the word. Stainless steel and aluminum only for celiacs.

I've found it very interesting by the way, I am fixated on whether the plates I am putting out are gluten-free or could be easily made gluten-free. It seems to be about 25% are gluten-free as is and could be guaranteed to be safe with some extra care, 25% could be made gluten-free easily (eg. change a breading to use another type of flour), and the rest are pretty labor intensive to make gluten-free (eg. pasta). Also, the folks that I've been working with have become very conscientious too. As a matter of fact, one of the guys used chickpea flour last night to dust his lamb rather than wondra just because it made his plate gluten-free. Now, he complained about how it didn't sear right all night, but cooks are, if nothing else, complainers.

Anyway, I'm off to work with a non-gluten-free special I am sad to say. Still, it's an easy fix for anyone who needs it that way so I suppose there is hope even for me a gluten fanatic. ;)

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debmidge Rising Star

Dear Concerned Cook: Thank you for taking the time to visit and discuss gluten-free meals with us. Please encourage all chefs/restaurant personnel to visit with us so that we can exchange info and ideas and come to an understanding of each other's parameters.

I recently had a great experience when I held my 25th wedding anniversary at a catering place (The Westwood in Garwood NJ). I spoke with the chef when I booked the party and he understood what I needed for my husband. They made my husband's meal 100% gluten free. I tried to make it very basic for them and not go overboard on what to make him. Just plain white meat chicken and mashed potatoes, he brought his own gluten-free bread. They helped make a very memorable experience wonderful.

Unfortunately, the diner we used to go to didn't seem interested in what consitutes a gluten-free meal...and we don't feel confident going there any more. We were pretty much weekly customers of the diner (good diner food).

Deb

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kschmitz Newbie

Hello,

I am recently diagnosed with celiac disease and am new to this forum. I am also very concerned about eating out. A dietician I contacted recomended bringing aluminum foil whenever eating out and asking that my meat/fish be grilled on the foil. Has anyone tried this before?

ks

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ConcernedCook Newbie

Deb-

It's good to hear that you had a good experience with that caterer. Typically, that kind of business is very careful when it comes to food allergy/illness issues and I'm sure that it helped to make it easy for them. In terms of the diner, well you win some you loose some (too bad you're loosing a good diner since they're hard to find). Honestly though, being a cook in a diner is probably one of the most difficult places to work because of the fast pace so I wouldn't count on them being as careful as they could be anyway.

ks-

I'm not too sure about the aluminum foil for a couple of reasons. First, I don't know if you're going to get any of the nice benefits you get from a grill (those nice dark char marks) because the foil won't make very good contact and will probably reduce the heat that the food is exposed to. So you may well be better off asking that it be cooked in a saute pan so then you at least get the nice browning thing going on. My second concern comes from the restaurant side which is that the foil might stick to the grill which could lead to a contamination issue down the road (aluminum foil in someone elses steak... not a good thing). Still, it could all work though I do admit that I will laugh like crazy at the first server who walks into my kitchen carrying a piece of foil. Also, most restaurants have thier own foil if you don't want to carry around your own so you can probably just ask for them to do it for you.

Anyway, I'll do a little experiment today before service and see if I can get the aluminum foil/grill thing to work with some level of success and without third degree burns on my part. Results to come shortly.

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kschmitz Newbie

Thank you so much for trying the foil on your grill. I'll be waiting for your response as to the results you got.

ks

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ConcernedCook Newbie

First off, I forgot to do the aluminum foil test last night. I promise that it will happen tonight.

Anyway, I'm still typing the recipes that started this whole post (transcribing 50 poorly written and/or just plain bad recipes so that they make sense and work takes a while) and have been looking at what other people have given me as recipes and it makes me wonder...

So here's the question, what do you want in a gluten-free recipe or gluten-free food in general? Not what do you want to know how to make, but do you want good food that doesn't contain gluten or do you want replacements for food that currently has gluten in it. Eg... do you want a gluten-free fried chicken or a nice chicken dish that doesn't pretend to be something else. Part of what brings this to mind is that I've played with alternative flours a bit in the past few days and while many of them will do an ok job they also tend to not be as good as wheat flour. I'm not saying that I wouldn't use the alternatives, but that I could probably make tastier food without trying to recreat already existing things.

I hope that makes sense.

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tarnalberry Community Regular

This is my opinion (and since I'm not on the list of people asking for the recipes specificially, it's not even an opinion of a member of the target audience), but keep in mind it comes from someone who cooks, knows how to cook in short amounts of time, enjoys doing so, and is good at it.

I have a feeling a lot of us would find the diet easier and be happier if we focus on foods that are naturally gluten-free. Trying to make something that we remember and love as a wheat-based item gluten-free, is making something that isn't. There are A LOT of naturally gluten-free foods - pick up a regular cookbook and you'll find a lot of things you can eat with no modification other than leaving out the "serve with bread" step. But a lot of us aren't as familiar with those recipes if we don't go out and look for them. I don't feel denied in missing anything, I don't feel left out, or deprived in any way when I'm surrounded by very tasty, unquestionably gluten-free food. (The Chili Pork Stir-Fry I made last night... mmm... tasty! Takes only as long as it takes to cook rice.)

I know other people prefer to modify recipes they're used to, but I'm sure I'll keep pushing for people to expand their horizons and try things that are naturally gluten-free (and not expensive), 'cause I'm silly that way. :-)

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debmidge Rising Star

Dear Concerned Cook: I was turned down by two other caterers before I found the one who would cook one meal gluten free. They rudely told me that they couldn't do that (cook one meal gluten free) -- both of these caterers advertise as a place for weddings, so they are equivalent to the place (The Westwood) who was able to do it. In retrospect I am very glad I went to The Westwood instead because in addition to the gluten free meal for my husband, the rest of the guests had great food that wasn't gluten free and great service. The Westwood couldn't do enough to make my 25th Wedding Anniversary a wonderful time.

Although the chef at the Westwood was somewhat familiar with gluten free food, in general servers and other non chefs are not. My husband is celliac, I am not. He hasn't set food in a restaurant since his diagnosis last Autumn. When I dine out with friends and family I ask the servers if they are familiar with celiac and I give them the CSA's restaurant card. I'd like to think I might be helping another celiac in the future by giving the server this info.

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Jamesmommy Newbie

Could you please tell me how you can get one or a few of the CSA card's you are talking about??

Thank you,

Jamesmommy

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Boojca Apprentice

I just want to say that we haven't tried eating out gluten-free yet....I'm working up the courage...but now that I know NECI is training it's students so well we're there!! I live her in Burlington and can't wait to take our son to his first dinner out!! ConcernedCook, you have just won a lot of business for NECI. They should give you a tuition break as a "finders fee"!! ;-) I'm letting our support group know as well as all my friends and family.

Tell all the restaurants/bakery that the best thing they could do is put a flourless cake in the dessert menu, or a fabulous parfait or something along those lines.

Bridget

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debmidge Rising Star

The restaurant cards are from Celiac Sprue Assoc.

www.csaceliacs.org

The pricing is .25 cents each card

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Any ideas for travelling

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Weak Positive Test

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      Weak Positive Test


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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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